Sunday, 7 February 2021

How we feel about virtual appointments, Do we feel safer or forgotten? BRiC's Collective Voice

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A recent Sunday discussion was all about virtual and remote appointments, how we feel about them and how to get the best from them. A very pertinent topic at the moment, suggested by one of our members, who asked “Do we feel safer or forgotten?”

One of the first points which became clear was that we felt we need to be more assertive than usual in order to ensure we are understood, that our concerns are taken seriously and that our questions are answered. It was mentioned that a lack of confidence could hinder this and leave us feeling ignored.

Many people suggested writing things down before the appointment; having another person in the room to take notes and remembering to ask for things to be repeated if needed. This was a problem often encountered by our members with hearing loss, a telephone call can be particularly difficult without the benefit of lip reading or seeing facial expressions. But the advent of the many video-call options has proved beneficial in alleviating this issue. In the current climate we generally have to attend appointments alone, without what is often a vital support, so being able to have someone with us during an online or telephone consultation can be a real positive of the “virtual appointment”.

Our experiences of online and remote consultation varied widely; many felt they were more prepared, having spent time prior to the appointment thinking about their expectations and needs. For GP “visits” filling out an online form before a telephone call often helps us focus on what exactly we want to discuss. Although some of us find the “tsunami” of questions on the forms overwhelming. For those of us who are at the early stages of diagnosis and treatment, the telephone or online consultations are not necessarily ideal, although often easier if we are further down that line. A common theme was a feeling that it was easier to discuss things openly because of a perceived distance between ourselves and the person at the other end of the call. Lots of our members access counselling, which has mainly now moved to remote sessions; for some this offers a whole new way of looking at things, enabling them to feel freer to discuss issues they perhaps found it hard to talk about face-to-face. Sadly, for others, the lack of face-to-face interaction left them feeling like the sessions were of little use.




One of the things which came up many times was the convenience of not having to travel, of avoiding busy hospitals and waiting rooms, public transport and of course the weather. Some of our members miss going to appointments, especially during lock-down when just getting out of the house can be a treat, even for the most mundane of reasons.

Having to chase doctors and be persistent is important, requesting follow-up calls and results and the amplification of our old friend “scanxiety” was often mentioned; but a positive outcome of the increase in online communication means that for some of us results are emailed much more quickly than when we had to wait for the next face to face appointment. One member only got a much needed appointment after breaking down in tears on the ‘phone; another said she thought she only got her appointment because she lost her temper – we are all under a great deal of stress from our cancer diagnosis, this is amplified by the current restrictions and tempers can be frayed. However, many members noted that they were aware of the exceptional pressure on the NHS and the knock-on effects it is having across the service. Concerns were raised in our group for the safety and well-being of the NHS staff, for their own mental health having worked through this crisis. There was vast praise for the teams who have adapted their systems and done everything in their power to keep our treatments and appointments running. It’s true things haven’t always run smoothly, for some people there have been delays and missed appointments, some will always prefer to see their practitioners face-to-face.

It was suggested that we, as members on an online support group, have an advantage in being familiar with IT and the capabilities of the internet, but perhaps for others it might be a huge challenge to access a video call. For those with sight or hearing loss, or a lack of confidence, preparing for and negotiating a video or telephone consultation could be stressful and upsetting.

The main advice which came from our discussion was that in dealing with this ever-changing system we need to prepare; write down our questions, think about our expectations, ask for things to be repeated or sent in a letter afterwards, have someone with us for support and try not to allow ourselves to be rushed through a consultation. It is also worth remembering some of the more positive outcomes, less travel and less time wasted in waiting rooms for example. For some, telephone and online consultations are too impersonal and will never replace face-to-face visits, particularly if a physical examination is needed. There was an underlying fear that we may never go back to the old way of visiting the doctor and a general agreement that sometimes, we need that personal interaction more than the convenience of a call. But we also agreed that with good preparation a virtual appointment can work well.